Zarnow: Alzheimer's support keeps on coming

The menu was strictly potluck normal: pizza, salad and Roseanne's yummy carrot cake. It came with backyard conversation – that easy, verbal volleyball between folks who know one another well.

These dozen or so folks know one another beyond well – from skin-deep pain and joy to the fears you feel deep in your bones.

This is a support group for caregivers sponsored by the Orange County chapter of the Alzheimer's Association, started by volunteer Jacque Schweppe at the Tustin Senior Center 22 years ago.

You might think a support group is something you hit when you need it – and never miss when you don't. Not this group.

"I would be leaving, the meeting over, and they would all be standing outside talking," Schweppe recalls. "There's nothing usual about this group."

They gather for monthly socials, but also for funerals of family members they've heard about so much. More unusual though, after the loss of their loved ones, they continue to attend.

The "alums" support newcomers as someone supported them.

At every meeting, Schweppe passes out the rules: guidelines to communicate compassionately with those who have dementia. It's tricky when arguing, reasoning and confronting don't work.

She shares a picture showing the physical deterioration from a normal brain to an Alzheimer's patient – a graphic reminder about why they simply can no longer do some things.

"It's my responsibility to prepare these folks for everything they are going to face," Schweppe says. "The agenda is what their needs are that day."

Schweppe was trained as a facilitator by the Alzheimer's Association, but she brings administrative experience from assisted living facilities. Her father had dementia.

The group tackles a range of issues: taking away the car keys, placing a loved one in a facility, approaching the end of life. Heavy, heavy stuff – lightened by sharing stories and frequent good laughs.

"There is no right way or wrong way to do any of this," Schweppe said. "There's your way."

Gerda Sparks joined eight years ago while caring for her mother. She recalls that hard decision to place her mother in a facility; it felt like she was giving up.

"At first, nobody else can do as good a job as you."

Ultimately though, when she was less exhausted, they were better able to enjoy their time together.

Sparks lost her mother four years ago. Today she's an alum.

"Now I set an example. You can look to the alums and see they have survived. ... I just love the people."

David Sun, helping his wife, relies on the collective wisdom of the group to help him.

"As a beginner, you don't know what to expect. ... When you are empowered, you feel at ease. There are fewer surprises."

Teri Bailey drives to Tustin from Yorba Linda for meetings.

Her husband, Dick, a teacher at Magnolia High School in Anaheim, was diagnosed with Alzheimer's at age 55. She lost him in 2010, but she's loyal to this group.

"There is such comfort in talking with someone who has been where you are, who has seen the whole progression from beginning to end."

Jennie Silva, who lost her husband years ago, was able to tell Bailey that time makes it better.

Lisa Champion joined two years ago when she was helping her elderly mother.

"The worst thing is to lose a loved one mentally, so slowly. You cannot stop it and you cannot save them," she recalls. "I thought that I could change the course for my mother ... but you can't save them."

Everyone was such a help to her that even after her mother died, she attends meetings to "bless back."

"Maybe I can make a difference to someone. The group made such a difference to me."

CREDIBILITY THROUGH EXPERIENCE

This group shares collective memory. Because everyone knows your story, there's comfort in the sharing and the knowing.

Marie Lombardi joined after her mother was diagnosed in 2009. She shows a photo of her lovely mother; you can see the resemblance.

"I was in denial for years, and I had no idea what to do. ... I see new people come now and I see their denial."

When her mother died in February at age 92, this group attended the service.

"I need them. They are like my second family."

For those starting their journey, the alums have credibility. They hold virtual doctorates in this subject, and Schweppe appreciates their impact.

"If it comes out of their mouths ... it's like gospel because this person has been there from the beginning to the end."

They set an example.

"It gives others hope that they, too, some day may resume their life. ... They don't have to sacrifice their life. This disease doesn't have to take two of them."

When Sophie Joyce joined in 2005, she could hardly speak through tears for her sister – her lifelong friend who used to call every night at 8. She died four years ago and still, Joyce quietly cries. Kitty Haigh, a member for 10 years, tells her that's OK.

"I was there every day for her," Joyce says. "I'm still here because I feel like I could help someone else. This is part of my family."

Schweppe guides the group, but as members share advice, they drive it.

"If someone new comes in, they are asking them the questions, one by one," she notes with a touch of pride. "They have learned well."

In turn, the group heaps praise on her.

"Jacque brings strength and compassion," Haigh says. "Because of her, I knew I could get to the next month."

Others chime in, but Schweppe stops it: "I don't want it to get this way."

Instead, she wants the conversation to go this way:

How can we reach out to the many caregivers – struggling to do it all – who would benefit from a support group?

"When someone starts a group and they are a basket case and distraught and exhausted looking – and then a year later they are healthy and well – that's such a rewarding feeling," Schweppe says. "You have been part of the healing of this person."